Another Freedom Gone

I have a bitter taste in my mouth, so my tone may reflect that. Tonight they took another freedom away – now Hana’s Ikus must stay plugged into the wall, rather than the extension cord. One time, when we plugged the Ikus back in to the extension cord, it took three or four minutes for the red light that indicates no warnings to go off. Somehow, I feel like it has gotten carried away. I don’t know how the message got relayed but I felt like our nurse was not really getting what I was saying and was kind of adding more to what was going on (or not going on). I hate complaining about nurses but I’m just so annoyed and irritated with myself for saying anything at all.

Hopefully this is not a permanent change but it has already been harder. We are definitely not getting out of the room as much and I can tell it is wearing on Hana.

Hana did have a great play date today when two kids from the neighborhood came down to visit and Hana was VERY excited and happy.

In medical news, Hana was taken off of the drug Zantac altogether because the pharmacist felt like it was the only way to really see if this drug is what is causing Hana’s elevated liver enzymes. I don’t even know if the Zantac was really working. The exciting news of the day is that the IVIG therapy seems to be working. The very basic report I heard was that of the ten antibodies that were high, six of them have come down. I don’t know much more than that but it is good news!

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Happy St. Patrick’s Day!

120 days in the hospital, 101 days post-Berlin Heart, 93 days on the transplant list.

4 thoughts on “Another Freedom Gone

  1. My heart breaks for all of you when I hear of little freedoms being taken away. You are all giving your all and doing it masterfully. I’m pulling for Hana that the news of a transplant will be imminent. Warm regards, Julie Blade.

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  2. Hopefully, this is a short term restriction. I’m sure they are being overly cautious after the Pink Ikus issue. Great to hear the IVIG treatment is working!!! And the play date pictures are too cute!!!

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